Post-Treatment > Headaches
AN Headache Case Histories
Captain Deb:
Inspired by nipandales post, I've decided to start a thread for us post-treat headache sufferers and STRONGLY suggest to any physicians currently treating us to log on as a guest and read it. Sort of a Case history file to use as a diagnostic tool. We could even print the thread out and take it to our appointments. Please limit the chatter to other threads and just state your:
1. Treatment status( how many years/months post op)
2. If you had headaches pre-diagnosis
3. Surgical approach, facility and surgeons name
4. Family history of headaches
5. When headaches started started post-treatment
6. What diagnostic tests you've had (MRI CT Spinal tap, etc)
7. Description of headaches
  a. frequency
  b. intensity and duration
  c. recognizable triggers
  d. location on head/neck
8. what medications/treatment you've had
9. Any "definitive diagnoses" you have gotten from a specialist
In your reply, use the quote button so you don't miss any thing from the list and feel free to add to it. I am the only post-AN surgery patient my neurologist has EVER seen and has no idea what to do with me. I know it's a lot. I am hoping a dialog can be opened among patients and doctors to help us all find a solution for us so we can have our lives back!!!
Capt Deb 8)
ppearl214:
great list, oh Pirate Wenchy one! I'm meeting with my primary care physician this Wed... she's been handling all of my pain mgt and such just prior to my treatment and will now take back that task now that I'm post treatment. This WILL come with me Wed. Thanks hun! :)
xo
staypoz:
Great idea. I think the fact that I have had 3 different diagnoses from board-certified specialists speaks volumes.ÂÂ
1. 1 year, 11 months post-op
2. No history of headaches pre-op
3. Suboccipital craniotomy and "fat pack" for CSF leak from ear; John Hopkins, Dr. Rafael Tamargo
4. No history of headaches
5. Two weeks post-op
6. MRIs, x-rays, blocks to determine origin of pain
7. Daily overall head pain, daily neck spasms, frequent severe head pain emanating from incision site and severe neck spasms, all pain sometimes accompanied by nausea, sometimes pain referred to forehead, sometimes pain in ear, kept diary and could not identify any triggers except exertion, including standing up!
8. Daily OTC NSAID; botox, triggger point injections, accupuncture, nerve blocks, physical therapy, massage, reiki, and scheduled for hypnotherapy
9. occipital neuralgia, chronic daily headache, torticollis
ppearl214:
Ok, Pirate Wench.. here are my answers:
1. Treatment status( how many years/months post op)
2 mos post Radio-surgery (Cyberknife)
2. If you had headaches pre-diagnosis
Yes, migraines, usually attributed to "time 'o month" although noted primarily in occipital region (also note Chiari 1 Malformation, for which the headaches will also occur)
4. Surgical approach, facility and surgeons name
Neurosurgeon: Peter Black/Elizabeth Claus - Brigham Woman's Hospital Boston
Cyberknife, Beth Israel Hosp, Boston
5. Family history of headaches
typical migraines with siblings due to time o' month. One sister with massive headaches, diagonosed Aug 1969 with childhood astrocytoma (malignant brain tumor). Passed away Dec 1969
6. When headaches started started post-treatment
too soon into "post treat" now to answer sufficiently
7. What diagnostic tests you've had (MRI CT Spinal tap, etc)
numerous MRI's
8. Description of headaches
  a. frequency - now daily
  b. intensity and duration - some "sharp" pain in left ear (AN side). Otherwise, overall "rated 6-7 on pain scale"
  c. recognizable triggers - no triggers recognized at this time
  d. location on head/neck - left ear, but primarily in occipital area
9. what medications/treatment you've had
Imitrex 100 mg, Tramadol (50 mg), also told to take both together.
10. Any "definitive diagnoses" you have gotten from a specialist
None other than the AN and Chiari 1 Malformation.
Deb, not sure if this helps since I'm not micro-surgical, but.. hey.... worth a shot! :)
xoxo
Captain Deb:
--- Quote from: Captain Deb on June 04, 2006, 10:37:12 am ---
1. Treatment status( how many years/months post op)
2. If you had headaches pre-diagnosis
4. Surgical approach, facility and surgeons name
5. Family history of headaches
6. When headaches started started post-treatment
7. What diagnostic tests you've had (MRI CT Spinal tap, etc)
8. Description of headaches
  a. frequency
  b. intensity and duration
  c. recognizable triggers
  d. location on head/neck
9. what medications/treatment you've had
10. Any "definitive diagnoses" you have gotten from a specialist
--- End quote ---
Wow, staypoz, you are my clone!
1.  3 years 6 months
2.  Occaisional migraine-like occipital headache pre-op nothing significant no nausea
3.OOPs! forgot the three--I'll edit later
4.  Middle- Fossa, HEI Drs. friedman and Hitselburger
5.Mom had migraines (she says--had a little subastance abuse problem so who knows!)
6. First brainwreck 10 days post-op--increasing frequency till 9 months post-op was in bed most of the time
7. MRI, CT both with contrast
8.I have exertion headaches that are a dull ache just about everytime I do anything strenouos, bit it has gotten better in the past year. About once a month I get a real brainwreck--shaking, crying,tearing, on pain scale definite 10--starts in the neck and crawls over to incision area and behind eye--ALWAYS on AN side. Escalates rather fast, but can emerge from a dull all-day exertion headache as well.  Sometimes I'll go thru cycles of having these every morning for a while. Triggers are bending over gardening or stretching canvas, picking up toddlers.For a while, low barometric pressure was getting me
9. Amytripteline, , Topamax, Inderal, Verapamil, Indomethacine(currently on this one, but ready to bail cuz of stomach problems) as preventatives
hydrocodone, fioricet, Imitrex injectable(works the best) Zomig inhalant, Maxalt, Imitrex pills, Relpax pills. The pills don't work, the Zomig works OK sometimes, but the Imitrex injection bailed me out on my last biggie when the Zomig failed on the one before it. I give everything ONE chance--don't work, move ON.
10. Nothing definite,but  cryptic CSF leak and hemicrania continua have been discussed
Thanks to all who participate in this  survey--takes a while, I know, but it may be worth the effort in bringing some relief to some of us!!
Capt Deb
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